Wednesday, September 17, 2014

Legal win for ME patient in the US - Shout Out About ME


When Ms Burmeister filed her lawsuit against the HHS and NIH back in January this year she accused federal administrators of playing a "secrecy game".

"Patients with this disease have been harmed, dismissed, ridiculed, abused, neglected and completely abandoned by the government, and as a result, by the medical profession, insurance companies, friends, family, neighbors, colleagues; in other words, by society at large," blogged Ms Burmeister at the time.

"This is largely due to the unscientific government-sponsored case definitions, another one of which was ordered from the IOM, which is the issue at the heart of my FOIA request.



Wednesday, September 10, 2014

ME/CFS HealthWatch - Jennifer Brea Talks About Obstacles, Adjustments, a...

September 10th, 2014

Interview: Jennifer Brea Talks About Obstacles, Adjustments, and Inspiration

Jennifer Brea reveals her inspiration for creating the film, Canary in a Coal Mine, and shares some of the obstacles she has faced in her ongoing battle with ME/CFS. Read More »
CFS News and Lifestyle
Burmeister Wins Lawsuit: Court Rules Government Must Produce IOM Documents
HHS and NIH violated federal law in response to FOIA request for IOM documents. Read More »

Models Suggesting Chronic Fatigue Syndrome Is "Amenable to Intervention" Provide Hope: Dr. Broderick Talks
Scientists believe that ME/CFS and FM can be treated by "resetting" the brain. Read More »

Post-Exertional Debility is an Important Symptom during Myalgic Encephalomyelitis
A physician makes the case to include post-exertional debility in the definition of ME/CFS. Read More »

Is the physical examination normal in CFS?
Heart rate and blood pressure abnormalities can be observed during a physical examination. Read More »

Diet Recommendations for Chronic Fatigue Syndrome & Myalgic Encephalomyelitis Patients
Patients need to maintain as wholesome a diet as possible to help their bodies heal. Read More »

Medical Research Review

SURVEY: Pain Treatments

From Our Readers:
Comments and Suggestions

VIDEO: 30 Years of Neglect: May 12 Demonstrations in San Francisco and Washington, DC

Tuesday, September 2, 2014

Where Fibromyalgia and Chronic Fatigue Syndrome Part Ways

Both Dr. Natelson and the Lights, however, have found differences in ME/CFS + FM vs ME/CFS patients alone, and Natelson argues that they're quite different disorders.

Now a recent study demonstrates an important way that this is so.

Reduced levels of BDNF – described as a nerve repair agent – were recently found in Chronic Fatigue Syndrome and multiple sclerosis. The levels found – less 25% of normal – were stunningly low, and this suggested that neuron functioning was taking a real hit in both these disorders. Given the nerve damage found in MS, that result was expected for MS – but not in ME/CFS.

A recent Fibromyalgia BDNF study seems to portray a very different disorder.
... With regards to BDNF, ME/CFS looks more like multiple sclerosis than it does Fibromyalgia.
* * *
Some years ago, I realized that if I say I have CFS, people assume I'm just tired, no other symptoms, but if I said Chronic Fatigue and Immune Dysfunction Syndrome, they'd hear the IDS part of it and assume, like AIDS, I was contagious, and stay far, far away so they wouldn't catch it just from talking to me or hugging me. 
So I started saying "I have something similar to MS" -- they can get their heads around that and it sounds like something seriously disabling, since most people have at least some concept of what MS is. The perception changed from lazy, or contagious, to "are you going to end up in a wheelchair? will it kill you?"
The problem with CFS vs. fibro is that most doctors don't know how to diagnose them properly.  After I'd gotten into a sleeping pill clinical trial, a specialist changed my diagnosis from CFS to fibro.  I asked why, and (like so many others) he admitted that "if the primary symptom is fatigue, it's CFS, but if the primary symptom is pain, it's fibro" -- since the sleeping pill was doing its job, I was no longer completely exhausted from sleeping only 2 hours a night, and therefore, even though I still had fatigue after doing some chores, and certainly could not work an 8 hour day, he felt I was no longer tired enough to have CFS, and therefore had had a miraculous cure and now only had fibro.  In a classic case of the patient knowing more than the doctor, I asked some pointed questions, and he insisted that I no longer had CFS because now I was complaining more of the pain, which meant fibro.
He hadn't done any blood tests, brain scans, fMRIs; the change in diagnosis was entirely based on my no longer waking up tired because I was getting 8 hours of sleep instead of 2.
Maybe he should have done the tests listed in this article to figure out what I really have. 

Monday, September 1, 2014

Near DC? Want to participate in research?

Georgetown in DC needs civilians with ‪#‎CFS‬ to get in study...they need 72 participants.......Exercise and Brain Scan

The Chronic Complex Diseases Study Purpose: to understand Chronic Fatigue Syndrome (CFS) Who: Adults (over 18 years old) with and without CFS are invited to participate. What: Subjects will have magnetic resonance imaging (MRI) brain scans then bicycle exercise tests. They will stay overnight, then have a 2nd exercise test and MRI the next day. Where: Clinical Research Unit, Georgetown University, Washington D.C. Compensation for time and travel will be paid. Contacts: Telephone 202-687-8231, FAX 202-687-9886 or

Wednesday, August 27, 2014

Infographic Shows Differences Between Diseases We Donate To & Diseases that Kill


"while all charities have overheads, some deliver a much, much larger proportion of the dollars they receive to where it can make a difference than others.

However, high profile events like the ice-bucket challenge tend to disguise how little relatively wealthy people actually give away on average. If we spent as much on fighting disease as we do on bottled water to pick just one example, we'd have beaten most of these long ago."

* * *
No surprise, cancer gets the lion's share of donations, but it's not the leading killer.
People get really bent out of shape when I point out that the word "cancer" is no longer an automatic death sentence -- some types of cancer have a 90%+ cure rate -- there's just not as much reason to fear it as there was before gamma knife surgery and chemo/radiation were invented. 
CFS, however, is a life sentence.  Our cure rate is zero.  Oh, there are a few who go into remission sufficiently to go back to work full-time (I did), but even they live with the sword hanging over their heads, unsure of when (not if) they're going to go into relapse and be deathly ill again.  I've now been off work in relapse longer than I was back to work in remission.  But because people don't live in fear of dying of it, forget about raising hundreds of millions of dollars to fight it.

Tuesday, August 12, 2014

XMRV also retracted for Prostate Cancer

Retraction Watch

Authors retract highly cited XMRV-prostate cancer link paper from PNAS
Written by Ivan Oransky
August 12, 2014 at 8:33 am

Retraction Watch readers may recall that nearly two years ago, an
editor at PLOS declared the scientific story of a link between XMRV,
aka xenotropic murine leukemia-related virus, and prostate cancer
over, saying that a retraction from PLOS Pathogens was the "final
chapter." (That retraction led to an apology from the journal about
how it was handled.)

Perhaps, however, there is an epilogue. This week, a group of authors
who published a highly cited 2009 study in the Proceedings of the
National Academy of Sciences (PNAS) making the same link retracted it.
Here's the notice, signed by all five authors:

"Retraction for "XMRV is present in malignant prostatic epithelium and
is associated with prostate cancer, especially high-grade tumors," by
Robert Schlaberg, Daniel J. Choe, Kristy R. Brown, Harshwardhan M.
Thaker, and Ila R. Singh, which appeared in issue 38, September 22,
2009, of Proc Natl Acad Sci USA (106:16351–16356; first published
September 8, 2009; 10.1073/pnas.0906922106).

The authors wish to note, "Due to work performed in other labs, we now
know that some conclusions from our paper on xenotropic murine
leukemia virus-related virus (XMRV) cannot be true. However, other
findings that we reported in that paper still remain valid.

"XMRV was first described in 2006 as a new retrovirus detected in
prostate cancer tissues (1). We replicated this finding, identifying
XMRV sequences by PCR from an independent set of prostate cancer
samples. Other groups also detected XMRV sequences in prostate cancers
by PCR (2, 3). However, subsequent studies showed that XMRV was in
fact generated by the recombination of two endogenous murine
retroviruses when a prostate cancer was passaged in nude mice to
generate the 22Rv1 cell line (4). The detection of XMRV DNA in various
human tissues by PCR has been attributed to contamination of
commercially available reagents with mouse DNA (5).This explanation is
the most likely for the PCR findings we reported.

"The immunohistochemical staining with anti-XMRV antiserum that we
reported in our PNAS publication was most likely due to
cross-reactivity of our antiserum with a protein present almost
exclusively in malignant prostatic epithelial cells. We are in the
process of identifying this cross-reactive protein.

"We wish to note that other parts of our paper remain valid. We
created a full-length infectious clone that replicated efficiently in
a human prostate cancer cell line. We used transmission electron
microscopy to analyze the XMRV particles produced and showed that
their morphology was identical to type-C retroviruses. Using gel
electrophoresis and Western blotting, we determined the molecular
weights of all the structural and nonstructural proteins of XMRV. Such
detailed characterization of a xenotropic virus, including electron
microscopy, has not, to our knowledge, been performed elsewhere. This
characterization still remains correct and is relevant to the
understanding of other wildtype xenotropic viruses.

"Taking all of this information together, we would like to retract our
paper; specifically, the findings reported in Figs. 2–4 and Fig. S1
are no longer valid and we no longer believe that XMRV is associated
with prostate cancer.""

The paper has been cited 199 times, according to Thomson Scientific's
Web of Knowledge. The first reference in the retraction is to the
retracted 2012 PLOS Pathogens study.

A Science paper claiming a link between XMRV and chronic fatigue
syndrome (CFS) was retracted in 2011.

The Loneliness of Illness and Pain - Invisible Disabilities Association

"A huge part of illness is isolation. Oftentimes the overwhelming nature of chronic illness and pain drives even friends and family members away. This isolation turns into loneliness."
* * *
Even the very first time that I asked friends for help, they said No.  This was not, as some have argued, that I was soooo needy that I burned them out, but that they didn't even want to help the first time.
My friends were active people -- sitting around my living room chatting with a sick person didn't appeal to them as much as hiking, running, jet-skiing...  so they didn't do it.  Not even once.  I didn't need the rejection, I stopped calling and begging for a few minutes of their time.
In short order, my social life was limited to my mother calling once in a while, an emotionally needy friend calling to dump her problems on me so she wouldn't have to pay her shrink (which drained me even more, but I hated to discourage her from calling because at least it was someone to talk to), and whoever I could chat with on the internet.